Speaking of Dementia: How to Refer to Dementia in Racial-Ethnic Minority Community-Facing Communications

Abstract What do you call “dementia”? In academic writing, researchers often chose the inclusive, “Alzheimer’s Disease and Alzheimer’s Disease Related Dementias (AD/ADRD)”. When referring to the people experiencing dementia, the person-centered language: “persons living with dementia (PLWD)” is preferred. This is a welcome departure from the antiquated disease-centered language of “dementia patients” or “the demented”. Still, AD/ADRD and PLWD may be less fitting in community-facing education or participant recruitment. For instance, community-facing materials may benefit from choosing terms like “memory loss”, “issues related to memory or aging”, or “changes in ability, behavior, or judgment”. In this symposium we present a range of viewpoints focused on how to refer to “dementia” in community-facing materials/conversations. These viewpoints include those of several racial and ethnic groups (i.e., African Americans, African Immigrants, American Indians, Asians, Hispanics/Latinos/as/x/e, and Whites). We also include viewpoints from people interfacing with many different diseases that cause dementia (i.e., Alzheimer’s disease, dementia with Lewy bodies, Early-onset Alzheimer’s disease, and Parkinson’s disease dementia) because of the different manifestations of dementia that can arise from those diseases. Viewpoints were gathered through 1) a nation-wide community advisory board, 2) community conversations with African Immigrants, 3) a national effort to increase the representation of Hispanics/Latinos/as/x/e PLWD in AD/ADRD research, and 4) eight community projects exploring the African American AD/ADRD experience. These talks will present possible terms to use within groups, considerations to increase inclusiveness, issues with translation into native languages, considerations surrounding symptoms that may be most recognizable to community members, and stigmatized terminology.


Communication of Health Topics
• Pictures should reflect the community (physical features and culturally) and ones with people who are in closer proximity are more desirable.

Communication of Health Topics
• Shorter messages that are both easier and quicker to read.

What is good for your heart, is good for your brain!
Culture, Health Care, and Trust

What does this mean for the health of H/L adults with dementia and their loved ones?
• Family takes priority: Family financial security > individual well-being • Duty towards parents: Adult children closely involved in the needs of older family members • Diligence equals affection: Caregiving is not described as "burden," but rather as "doing right" by family • "Yes, doctor": Health providers are highly respected and rarely questioned • There is no "I": The well-being of one strongly influences the well-being of the others • When in doubt, the best equipped speaks for the rest: When a family member is unable to engage with the world as needed, whomever can step in must do so

Multiple ADRD Collaborations and Funding Sources
To synthesize key themes and recommendations identified in multiple projects designed to better understand the experience and implications of dementia for BIPOC and underserved communities ❖ Project #1 -DHS African American experiences with ADRD, two focus groups conducted by the Alzheimer's Association MN-ND ❖ Project #2 -Minnesota Board on Aging ADRD multi-cultural community Listening sessions with FQHC patients and staff affiliated "Safety Net" What is the culturally acceptable way to refer to dementia?
✓ Lack of consensus on use of Alzheimer's and dementia terminology.
✓ For some, it is disrespectful to "dumb down" the information.
✓ Others believe using the Alzheimer's and Dementia labels will cause elders to reject these words and deny the problem.
✓ The terms frequently used in initial conversations and education events include memory loss, brain health, cognitive changes, changes in thinking/behavior

What are your or your family/friends' concerns about Alzheimer's and dementia?
✓ Stigma and historical trauma impact beliefs.
✓ Lack of trust in doctors -active listening and two-way conversations build trust ✓ Discomfort with disease terminology ✓ Action will likely not be taken before a crisis.

Focus Group Findings
Community's concerns about Alzheimer's, dementia, and memory loss?

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❑ Identify African American cultural values and beliefs and their implications for addressing dementia.
❑ Be aware of historical legacies and current trauma.
❑ Identify and address myths and misunderstandings.
❑ Educate community members and healthcare providers about the multiple benefits of early diagnosis along with community resources.

Recommendations
❑ Engage community in developing age-culturally-relevant messaging to break the stigma, shame, and silence ❑ Deliver community-based, culturally-sensitive education ❑ Use the existing community assets and structures to disseminate information.

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• Background: Minnesota Board on Aging -dementia grant for an equity-based research collaboration with the UMN, Alzheimer's Association, MBARC and community partners • Purpose: To better understand the experience of dementia among BIPOC and underserved communities, as well as their health care provider expectations for ADRD care, to inform provider and community outreach, messaging and referrals for services.
• Methodology: ➢ Five community listening sessions community with cultural communities at greater risk for dementia and the tolls of dementia care ➢ Conducted with community at "Safety Net" healthcare provider clinics and community gathering spaces for older adults

Project #2 -MBA Community Dementia Listening Sessions
Participants from diverse communities wanted doctor's help: DHS qualitative research shows that African Americans are twice as likely as Whites to develop late-on-set Alzheimer's disease, and less likely to have a diagnosis of their condition, resulting in less time for treatment and care planning.
• Purpose: Focus groups information about their experiences with ADRD will shape future educational programs for working with this population in community and aging services settings, and health care systems.

• Methodology
Two African American focus groups 1) Persons with Dementia and their Care Partners/Givers 2) professionals working with older adults impacted by dementia

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"Your brain functions in many different ways, and every piece of your brain has a certain function. There's memory, decision making, or other situations… some of those duties and jobs kind of like malfunction and they're breaking down." "Short and long terms ... they can remember, some of them will remember back, and don't remember today. You know, and some remember the little baby but don't remember the daughter."

Focus Group Findings:
✓ Varying levels of understanding.
✓ Distinction between understanding of community members and understanding of professionals. ✓ Basic understanding: People with dementia are forgetful.
✓ Advanced understanding: Brain areas affected, which often leads to wandering.

What is the difference between Alzheimer's and dementia?
✓ Some participants, including professional staff, could not differentiate between Alzheimer's and dementia.
✓ General belief that Alzheimer's is more serious than dementia.
✓ Professionals described dementia as an umbrella concept.

Focus Group Findings Understanding the Difference between
Alzheimer's and dementia

Recommendations to MN State Alzheimer's Disease Working Group
Consider these guiding values when conducting work: • Authenticitymeet people where they are • Assets-based approach to equity and diversity • Openness in discussions -Acknowledge the role that race, and racism play -Seek input from those who are not of that culture but deserve "a seat at the table" of decision-making.
-Create opportunity for voices that have been hidden to participate in ideation and decision-making

Recommendations to MN State Alzheimer's Disease Working Group
Ask Equity Lens questions during your work: • What groups are most impacted or marginalized in relation to this policy/program/issue?
• Who is most effected by the policy/issue program? Who is included/excluded from this policy/program/issue?
• What are the biomedical and public health barriers?
• Who is at the table for decision making related to this topic? Who is missing?